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New National Caregiving Research Center To Be Based In Pittsburgh

Alzheimer's patient Dorothy Eckert and her husband John Eckert hold hands at their home in Norristown, Pa.

As baby boomers age, more Americans may find themselves caring for family members with disabilities.

A new research institute in Pittsburgh, called the National Rehabilitation Research and Training Center on Family Support, will focus on the unique challenges of caregiving. The center is a joint effort of the University of Pittsburgh and UPMC.

“A huge amount of the health care that’s delivered in this country is delivered by family caregivers, and they are rarely trained adequately or supported adequately,” said Heidi Donavan, the caregiving center’s co-director and a professor of nursing at Pitt.

The center will be funded by a $4.3 million grant from the National Institute on Disability, Independent Living, and Rehabilitation Research, which is an agency within the U.S. Department of Health and Human Services. The center's mission is to analyze data, develop mobile health initiatives, and conduct research.

“What’s really necessary now is to get what we know from research quickly into practice, and drive policy,” said Donavan.

Donavan cites one project based on the Capable Study, which will identify people who are at risk of not being able to continue living independently. Under the model, an occupational therapist, registered nurse and handyman assess a house's safety and accessibility, so that low-income, older adults can age in place.

Nancy Murray, president of Arc of Greater Pittsburgh/ACHIEVA, which provides support to southwest Pennsylvanians with disabilities, said she’s excited about this new center.

“Right now, family caregiving is not very well understood by policy makers,” said Murray. “The United States could not take care of people with disabilities, returning veterans, seniors, both children and adults with chronic medical conditions, if it were not for family caregivers.”

A 2015 report from the AARP Public Policy Institute confirms this, as it found that family caregivers provide nearly $470 billion a year in uncompensated care.

"[Family caregivers] need respite to gather their own strength to continue doing this work," said Murray. "They need information on state and federal programs that might help them ... they need help coordinating all the services [their family members] need."

The Centers for Disease Control and Prevention finds that one out of four Americans, or 61 million people, have a disability. After mobility, the second most common type of disability is related to cognition.

WESA receives funding from the University of Pittsburgh and UPMC.